This Cancer Thing Sucks

Monday, September 16, 2013

Ever since mom passed, at times I wake up in the middle of the night in a foggy and non-lucid state. The first thought that pops in my head is, where's mom? I need to call her. We should go shopping and hang out. I need to tell her what Baby C just did cause that would make her smile. In that state of mind, I don't realize she's gone and all that's happened. Did all of it even really did happen?! Then, as I breathe and my lucidity gradually eases in, all the events in the past year just hits me...a rude awakening. She's not here anyone. She's gone forever. I will never see her face in a lively manner again. Her smile, her laughter and most of all her voice. I miss that. It's a surreal concept with her being gone. She was a part of my daily life. Even as an adult, there was not a day I didn't at least speak with her over the phone. We saw each other several times a week. We were just close. And then she went away.The last few weeks, I've been haunted by all the bad times. It's strange, I can remember those memories so precisely. Every little moment and finest detail. Then, as I try to focus on a good past memory (before she got sick); I struggle. I really really have to focus to remember the times before her illness.
I think about her each and every day. Second guessing decisions what were made. Wondering if there was something more I could have done to save her. To make her healthy and for her to be here with me enjoying times with the grandson she very much wanted to meet. But it wasn't in my control.

Thursday, August 8, 2013

It's been awhile since my last post. Partly, it's because in any given week or day even, I go through a slew of emotions and by the time I sit to write an entry, and come back to edit it; the feelings of things are just different (if that makes any sense).To summarize, lately, I've been very regretful of certain things. I regret not giving mom a grandchild sooner. I know it's stupid to think that way but for years and years, I put off having kids . She'd always ask me when she was going to be a grandma. She was SO looking forward to the day when she would be. It just really breaks my heart I guess, that she was two months shy of meeting C. But it is what it is, I suppose. Can't change it. Then I think that if I were to have had a baby sooner, I would not have been able to take care of her to the extent I did. So the timing actually worked in a weird way cause there were days I did not know how I did what I did. So, if I had a child in all that - I don't know how I would've done it. Just last night, I was thinking of her and chatting with my husband about all this and it dawned on it that her passing at the time she did was actually in a weird way a gift to me. She was worried about me and my pregnancy and dealing with so much. She'd ask me every day how I was feeling. Even the afternoon before she passed (while she was alert enough), she asked me to come over closer. I remember her caressing my belly and then kissing it..then she softly smiled. It was a child-like smile of pure and utter content and happiness. Then she closed her eyes and feel asleep. I see now that she wanted to go so that I can start my family and it be 100% of my time and focus.Some other things that's been consuming my mind several weeks ago were those very dark times. The times where you feel so lonely and helpless. The times you see all the bad stuff when you are the primary caregiver. I've just been having flashbacks of some of those times. Like the time I went out for just a bit and came back to find her on the floor propped up against the hospital bed with her oxygen like across the room and she wasn't able to reach it and she was just crying. Or, New Year's Eve when she woke up in the middle of the night and was having breathing issues and she said she felt like she was going to die now. And rushing her to the ER at 2 am in the morning and then finding that she had a massive blood clots that were branching out and she was touch and go for a few days. Or the time I was on the sofa in an adjoining room while my sister sat with her as the nurse came in to give her medications and she her body had to be readjusted and all I could hear was her crying and moaning my name. Or the numerous times I had to clean away every form of bodily fluid and she looked up at me with helpless eyes....knowing that her dignity was going away but relieved that I was there with her to handle it all. I think the worse of it was when I had to wipe tears away when she'd ask why this was happening to her. Before I had Baby C, I use to think how gross it was to clean those dirty diapers, or all the puke and spit up..and just taking care of another human life. When C was born, I said to myself, "I got this".Lastly, I've been feeling that void again with mom not being here. I am enjoying all the little things Baby C is doing, all the little milestones he's reaching and it just makes me so so sad, that mom is not here to see it. It's not as bad as the first few weeks of his birth...those days were bad. So many nights as I nursed him, I couldn't help but cry and cry. But then you don't want your baby to feel that sadness emanating off of you so you keep it inside..and just hold him closer to show him you love him more than anything else in the whole world.

Friday, June 28, 2013

Today I had my first appointment with Dr. A and this time I was the patient. Kinda strange. It was the first time seeing him in person since mom was in the hospital and entered hospice care. We had communicated via email and phone a number of times since mom passed back in February. I knew that my preventative endoscopy was long overdue (the last one was early summer of 2011). I was suppose to get one last year but with mom getting diagnosed and then me getting pregnant, it was advised to wait until after the baby was born to do the procedure. I was fine with this because I did not want to cause any complications while pregnant.

Earlier this week, I reached out to my genetics counselor and Dr. A on the course of action for me going forward. I was now 9 weeks post-pregnancy and got the OK from my OB that the procedure would be safe to do now. I wanted to be as proactive as I could be even though flashes of my mom's endoscopy last May brought back some very painful memories.

Dr. A wanted to meet in person and go over everything. I decided to meet him at a different clinic. Apart of me just didn't want to go back to the clinic mom went to. Too many familiar faces, and I know there would be questions from all the chemo nurses and staff who were fond of mom. We were regulars there for most of last year and I just didn't want to see that look of sadness when I tell people what happened. I wanted to dust that off and start fresh and I did.

I decided to take Baby C with me too. I felt that I needed to be with him. He was going to get me through this. His smiling face gazing at me...his cooing...and his eyes just looking deep into mine. That is what this was about.

As I waited patiently for Dr. A to come into the room, a familiar face peeked in. It was my genetics counselor! She was a site for sore eyes. Coincidently, she was just making a quick stop at this clinic location and ran into Dr. A in the hall who mentioned I was there today. We sat and talked for a few minutes. We oogled at Baby C as he talked baby gibberish. She told me of some interesting studies in the genetics world for diffuse stomach cancer. Interesting stuff!

Shortly after she left, I had my consult with Dr. A. We went over A LOT of information. The first thing he told me was that he wanted to coordinate my care going forward. He said that the research from BC Cancer Agency was still in the works and we don't know anything concrete right now. So, going forward, I have to assume that I am positive for the genetic marker in order to be as agressive with prevention as possible. He definitely wants me to get going on routine endoscopies. Instead of once a year, he recommends twice a year. Also, he said that he is going to find a GI that is local who would be best at early detection. He wanted expertise. We also explored other testing that I will eventually have done in the coming year or so: endoscopy ultrasound, CT, MRI, breast cancer monitoring, and colon cancer monitoring. As you know, having the CDH1 marker not only makes you pre-disposed to stomach cancer, but also breast and colon cancer. He wanted to make sure that all angles of this were going to be looked at. We also chatted a bit about prophylactic gastrectomy..which we will explore down the road here.

I left the appointment feeling empowered. A beautiful sunny day, the wind in my hair, my son in the back seat..I felt good. I can't predict what the next few weeks, months or years will bring. But, what I do know is that life is worth living and I'm going to be calling the shots every step of the way in order to see my son grow up.

Friday, June 21, 2013

Is there a Death? The light of dayAt eventide shall fade away;From out the sod's eternal gloomThe flowers, in their season, bloom;Bud, bloom and fade, and soon the spotWhereon they flourished knows them not;Blighted by chill, autumnal frost;"Ashes to ashes, dust to dust!"Is there a Death? Pale forms of menTo formless clay resolve again;Sarcophagus of graven stone,Nor solitary grave, unknown,Mausoleum, or funeral urn,No answer to our cries return;Nor silent lips disclose their trust;"Ashes to ashes, dust to dust!"Is there a Death? All forms of claySuccessively shall pass away;But, as the joyous days of springWitness the glad awakeningOf nature's forces, may not men,In some due season, rise again?Then why this calm, inherent trust,"If ashes to ashes, dust to dust?"

Since my mom's passing in February, my sister and I have been holding off on spreading mom's ashes. Mainly, because it was winter here in Minnesota and mom wanted her remains to be spread over a body of water and all was frozen over. She left the decision of the exact location up to my sister and I. She said to do whatever we thought was best and was easiest for us.

Several weeks ago, a week before my mom's 61st birthday, we decided to finally take care of this piece of unfinished business. We decided to spread the ashes along the Mississippi River. We found a serene beautiful spot along the river. We choose this location because it was close to where she worked and lived. She loved living in downtown St. Paul and enjoyed walking along the river bank when the weather was nice. It seemed fitting.

It all worked out perfectly. My sister was in town helping me clean out mom's place that weekend along with my aunt and uncle (parents of the cousins I lost of the same cancer) It just felt right that we were all together and knew mom would approve of it being done at this time. It was so nice to have my aunt and uncle there because due to some unfortunate circumstances, they were unable to come to the funeral. So having them be a part of the finality of life ceremony, meant a lot. Mom would've been so happy. My uncle (mom's bother) lead the informal ceremony with some personal words and then sang a religious verse in Hindi. My sister and I held mom's ashes and slowly poured them into the water while my aunt assisted us, as she always has. When we were done pouring the ashes, we saw three ducks swim by. We all smiled. I like to think that it was a sign...Mom, Rajen, Sandra. After we finished, I felt release. I felt mom's spirit was there with us..telling us that she's ok and to move on. Telling us that she's with Sandra and Rajen now and she'll see us again someday.

Thursday, June 13, 2013

Over the last few weeks, I've been handling some unfinished business that I finally felt strong enough to tackle. As you can imagine, the first few weeks after having Baby C has been bittersweet and it really took an emotional toll on me especially in post pardum and mom being gone (will take more about this in a separate blog post).

The first thing that I have been dragging my feet on is opening the two suitcases that I quickly packed the morning mom passed from the hospice. I don't really know why I couldn't open it -- mom passed in February; it was now JUNE. I had the two suitcases in my spare bedroom and would always glance at it in passing and just didn't have enough courage to open it up. I guess apart of me knew that once I open it, I'd relive that morning. I'd see the pants and top that the nurse took off her body as they prepared her body to move to the funeral home; the soft pink robe I got her cause she was always so cold in her final days; the wig she wore at the beginning of the journey but later just wore hats; the small trinkets, notes, pictures that sat beside her on her nightstand. I'd smell her favorite perfume and her unique scent.

I guess when it came down to it; I was just plain afraid to relive that morning. Being woken up in the wee hours of the morning, rushing over to the hospice, entering her room and just seeing her lifeless body there. She wasn't made up and didn't look like how she did at the funeral funeral. Instead she looked sick, and lifeless. The one thing I remember was her jaw dropped which was normal of the deceased. That's an image that will haunt me. I didn't want to remember that again. I remember taking a picture of her because my sister wanted to see her (a few weeks later, I deleted the image from my cell phone). I wanted to remember her happy, smiling and lively.

Well, a few weeks ago, I was telling my husband about how I should really open it so that I could get her iPad out to give to my sister when she visited. My sister worked very hard at putting so much on there and I knew she'd want to keep it. I knew I had to open it. I sat there just staring at it. My husband saw this, grabbed the two suitcases, brought me closer and just opened them. He helped me go through it to find what I needed. I thank him for that. I couldn't have done it alone.

Monday, May 20, 2013

As some of you know already, I'm now a mom! It's still a surreal concept but I'm enjoying every minute of it. I remember chatting with my mom last summer during one of the chemo sessions about my birth. I remember her telling me that it was the most miraculous, amazing, and life changing feelings to ever endure. She could not have been more right. She said that the first time she held me and I opened my eyes and gazed at her, her heart just melted. I felt the same...the first time I held C in my arms and he looked up at me with those deep brown eyes, it took me to a place where my heart was just bubbling over with love. After all I had been through and the sadness that I experienced, he was here and I was so overjoyed. A reason to smile, a reason to be happy...a reason to live and enjoy those who are here and love you.

I thought I'd share the emotional day. Every mom has their story of their child's birth. Here's mine...

It was Sunday night and we were watching Game of Thrones like we normally do. I started getting a couple really bad cramps but through nothing of it cause I had been getting those off and on all week and it did not result into anything. From 10 PM - midnight, the cramps started getting worse. Close to 1 AM, I knew...I was actually having real contractions. I timed them and they were about 10 minutes apart. I told S and we started to get stuff together and make our way to the hospital. We arrived there around 1:30 AM and I was checked in and then admitted into one of their pre-labor rooms to monitor my status. I was hooked up so they can track my contractions. I was dilated only 4 cm (which I have been for the past week), so no change there. Between 1:30 AM - 2:30 AM though, there was no progression. My contractions all of a sudden were getting farther apart. The staff told me that even though I was in active labor, that it would be awhile until I was ready. They suggested I head back home and track my contractions until they were about 5 minutes apart and then come back.

I was sad that I had to go back home cause I felt like I was so close. Between the hours of 3:00 AM - 5:00 AM, I tracked my contractions. They were getting painful. The contractions were now about 3 minutes apart. We got our things together and headed to the hospital again, and this time they checked me in right away to what would be my delivery room. The contractions were intense to the point that I couldn't talk anymore. I kept progressing (about 7 cm) and at about 7 AM, I was given an epidural to alleviate some of the pain. This was a godsend. Things calmed down a bit the next few hours but unfortunately I stopped progressing and stalled out. They decided to gave me pitocin, an inducing drug, to help things get moving. At around 11 AM, the baby's heart beat started dropping which wasn't good. They stopped the pitocin and I had to move into various positions to see if I could get the heart rate back up, which I did. It was intense! We waited a few more hours, and still...no more progression.

They decided to start the pitocin again, but at a lower dose. I was pretty out of it and almost half asleep. All I remember is around 2:30 PM or so, my OB and a few nurses came rushing to my room and said the heart rate was dropping low again and how the baby wasn't liking it and the baby had to come out now. They said that I had to do an emergency c section. Within a few minutes, I was whisked away to the operating room with a dozen or so people flurrying around me. My heart began racing and so many thoughts flooded my mind. A part of me could not believe this was happening. All that I kept thinking was I needed my baby to be ok. He had to be ok. Something good needed to happen. I held my husband's hand and tried to calm down as they prepped me for surgery. I closed my eyes for a moment and talked silently to mom. I said, "Mom, you told me that you'd be here if I ever really needed you. I need you now. Please let C be ok." What seemed like just a few seconds, I felt tugging on my body and shortly after, I heard my baby boy cry. Tears of joy ran down my face.

Monday, April 15, 2013

A few weeks ago I experienced my first birthday without mom. The entire birthday weekend hit me very hard. It was filled with a feeling of missing-ness and my heart just hurt so deeply that at times, it felt as if I couldn't breathe. This was the first birthday that she wasn't here. 30-some years ago, she was in a hospital about to give birth to me...her first born. And today, she wasn't here. That physical bond was not present. It was a strange and foreign feeling...that's the best way I can even describe it.

First things first. I was showered by emails, phone calls, messages from family and friends all over the world so I definitely felt very loved and thank everyone who reached out to me. But, my heart ached from mom not being here. What would normally be our "mom-daughter hanging out day", was spent with a cousin and her family. They truly went above and beyond to make the day seem not so sad and I truly had a wonderful time. We had lunch, we laughed, and even had a birthday cake with WAY too many candles to blow out (I'm getting old!).

The day after, on my actual birthday was very special as well. My husband knowing that mom was always the first person to call me each year to wish me a happy birthday very early in the morning, called my cell phone while I was getting up to take a shower. Yes, he was in the same room. Haha! He knew how sad it made me to not get that early morning phone call and took matters into his own hands to start my birthday off with a smile. It was such a silly but quirky gesture of love and thoughtfulness. We spent the rest of the day together. We stayed in and spent the day cooking together, and watched a movie. It was nice :-)

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Background

My name is Lorita and within the last few years, I’ve lost two close family members to stomach cancer. In 2008, I lost my cousin Rajen at age 37. In January 2012, I lost my other cousin, Sandra (Rajen’s younger sister) at age 39. Rajen and Sandra were like an older brother and sister to me and growing up, we did everything together. They taught me so much and I wouldn’t be the person I am today if it weren’t for their love, support and influence.

In Spring 2011, it was discovered that my family carried hereditary diffuse gastric cancer (HDGC). Individuals who inherit the genetic mutation for HDGC are at a high risk (around 60-80%) for developing gastric cancer in their lifetime. The majority of cases occur before the tender age of 40. Four years ago, when Rajen died, we never knew about any of this. It was my cousin, Sandra who became proactive in stomach cancer awareness and research. I followed her lead without hesitation. She yearned to find answers after she herself was diagnosed with gastric cancer in 2011 and did the ultimate action to fight. She removed her entire stomach to prevent the cancer from spreading. Unfortunately, this drastic action was not enough and the cancer metastasized in other parts of her body Christmas 2011. We lost her a few weeks later, January 13, 2012.

Back in the 90s, I also lost my aunt (my mom's sister) of stomach cancer. This was before we knew anything about HDGC.

More recently (May 2012) and with a heavy heart, my mom (age 59) has been diagnosed with stage iv diffuse gastric cancer as well. I am writing this blog to document the journey before me. As hard as it will be to write, I think it is important to share this experience and promote awareness of HDGC. (Update: Mom passed Feb. 2013)